MUSIC HEALS

This post is about a recent cultural event – “Pahila Paaul” by the CKP Samaj Music and Art Group of Indore. The Marathi phrase “Pahila Paaul” the literal meaning of which is the “The First Step " has definitely commenced a pleasantly fruitful journey which will have marvels for all of us in the years to follow. Because music is the only universal language that I know of. This event is the very first of its kind witnessed by me after getting involved with the group. The event was a true spirit lifter for all those who were a part of it. With the outpouring number of comments and appreciation that continued to follow for the rest of the week is a mere gesture to mark the emphasis on it.

“Music produces a kind of pleasure which human nature cannot do without.” - Confucius

I started preparing myself with my “energy saving mode” almost 1 week prior to this event which was worth attending. Just the thought of being be able to witness it with family was enough to provide me with a wish to attend the event which turned out to be a great success. As for me personally, it was a very energizing and enjoyable program which will have a lasting memory. It is very important for someone with a chronic illness to merely being able to come out in front of everyone. With the kind of uncertainty that I face due to the fluctuating symptoms of my disease, I am happy that I could attend the event. After attending the event, I could experience the true meaning of the phrase – “Music Heals”; which serves a greater cause of passion than just providing entertainment for a few hours.

Music has a healing effect on every person by calming the anxiety. It helps to release the happy hormones in the body by relaxing the mind. The calming effect of music restores the mental, physical, emotional, and spiritual health. Music evokes the spirit and cognitive responses. Music has an ability to restore speech. Patients who are Music lovers and music listeners respond to treatment better. Mental health affects the physical health of a person.

In the more recent years, today our lives have become materialistic in terms of being bothered about the ability to provide bread and butter for the family. Somewhere we forget to take time out for ourselves. Events like the Pahila Paaul give us a chance to live life to the fullest for a moment by triumphing all the thoughts providing a diversion to mind.

“To live is to be musical, starting with the blood dancing in your veins. Everything living has a rhythm.” – Michael Jackson

The credit of ensuing impact of re-inventing the cultural identity by putting up an excellently organized music concert, definitely goes to the entire team under the able guidance of CKP Samaj President Dr Vijay Pradhan and the convener Mrs. Aboli Dighe. Superb execution and music coordination was demonstrated by all the musicians along with the performers. The amount of enthusiasm shown by the house-full audience to encourage the organizers as well as the participants by boosting their morale will surely bring out more of such events which revitalize our cultural identity. Such cultural activities remind us that hobbies are not just for killing time but are instrumental in bringing out the best out of a person by giving a reason to be presentable. It needs immense courage to stand before an audience and be able to hold them right from the commencement to the end of the program. This is exactly what “Pahila Paaul” did. Kudos to the team members.

“Music doesn’t die” – Leo Tolstoy

The art exhibited by the silent, spoke all the emotions aloud. To tantalize the taste buds and for satisfying the “chota hunger” in the midst of mesmerizing singing and dancing event, we were provided with a decent quality authentic CKP style food and tasty snacks stalls with an innovative touch to the recipes. We hope to attend many more events revitalizing the contemporary art, dance, and music. Next event is very much awaited!!

x

All I have is HOPE !!

I desire understandably to have those I love or know care enough to take the time to

 1) Listen and then 

2) Invest and pour into my life after understanding.

My life is different. Very different, 

BUT IT STILL MATTERS !! 

At some point, my worth cannot be caught up in the conditioned fray that I must prove the validity of my struggle in order to be loved and accepted. Our lives are not contingent on one another. 

 

So it is OK if I walk away from those who do not pursue a true understanding of who I am and what I face. Because frankly speaking I deserve a much better life than MG. Currently, I do not have an answer to when will I be cured neither will I ever have. 

All I have is HOPE !! 

I hope for the best but always be prepared for the worst !! 

Courtesy: Myasthenia Gravis Unmasked 

A Walk Through My Life

Someone asked me why I was such a downer about Myasthenia Gravis. It was stated that I over did the symptoms and scared people for no reason. I have given this a lot of thought. Would it be any help to others if I wrote about my days of struggle?

“Oh, I woke up and the sun is shining and I took some pills !!”

How in the world can anyone get the word out about MG and the real Life I have with it? The truth is, living with MG sucks and the drugs that help me live with this rare disease suck even more. It’s a devastating disease. I was petrified of losing my independence.

MG is no joyride. I won’t complain about my life because I’m the happiest I’ve ever been. It’s a testimony of endurance. I consider myself lucky as I’m still here... alive and breathing.. and with my family.. even though I struggle every day. My heart is still beating and I can still breathe.

Sometimes we just have to live in the moment. Take each day a step at a time… things don’t get easier as such. ..You just learn to deal with them in a completely different way !!

I’m not a happy camper when I’m sick from the drugs, the weight gain, and puffy body. This disease IS scary. MG has a mind of its own and you never know where it will take you.

I began this journey feeling like the only person in this world that had to live with droopy eyes and double vision. I felt guilty for lying on the couch instead of working, cooking or folding clothes. But now I have found people who know exactly how I feel and what I go thorough to survive. Because they too face the similar situation.

“You look Good, has your illness improved”, I am sick of hearing these words from people especially the ones who know me but do not take the time to listen when I try to explain the condition. Too much ignorance out there… and I must keep people around me aware of what MG presents, to keep myself calm and not get flared up at people’s comments. Life is not peaches and cream !!

Just getting dressed in the mornings is sometimes a struggle and I need a reminder to myself to continue being brave… one real big weakness is eating and swallowing. I cannot go outside when the temperature is in excess. A number of times I have been crossing a road and a car appears from nowhere. I try to walk faster but my legs seem to slow down. I can no longer spend more than an hour or two in the market shopping goodies. Some days I hurt all over… I ACHE because my muscles don’t support my body and I have HEADACHES because my eyes won’t focus and there is the feeling of total FATIGUE that robs me of the ability to do the most basic of the tasks.

Some days when I am feeling great I push myself. If I do too much I pay for it that evening and night, my legs cramp up and I have to ease them. Sometimes people think that I’m lazy, but it’s so much more to it than that. I don’t feel like cleaning house all the time, and yes I do feel better when it is clean, but I don’t always have the energy to do it… very frustrating… I get tired easily and mid-days are most tough.

Myasthenia is a messed up disease. My biggest problems are speech and swallowing. It is not fun at all, not being able to talk and eat half the time! My mind is always racing with ideas, things that I want to do, places that I wish to visit but instead my body say’s NO… I feel trapped in my own body.

MG can be very isolating making one feel like a crumpled piece of a useless paper. This disease can take you to the darkest places if you let it. It scares every bit of me. I have lost everything I ever worked so hard for. For a time I question my faith, I questioned God. It took time for me to see that all of this materialistic stuff doesn’t matter. I may walk and talk drunk at times, I lay down a lot, and this is my life with MG. Am I too much of a downer? Maybe.

The worst part of this disease for me was not being able to smile or have a normal vision. Writing about your life, good or bad is courageous. Yes, I can seem like a downer if you don’t understand. Scary? Absolutely !! Will I change how I write about Myasthenia Gravis? Never !!

I tend to isolate myself when I have flare-ups because people really don’t understand. One day I feel like running a marathon & look like a champion. The next day I may be feeling weak and not solid like a jello and look like a limp dish rag. So it is hard for someone to understand or even believe that MG flare-ups can come so sudden. I get tired of trying to explain to people that I’m tired & I’m weak. Actually.. I am tired of being sick and sick of being tired.

Other than the MG life is good. Trying to hold on to life with MG is the hardest part of this disease. When I am too sick to move I have nothing to do but remember the days when I could run free. I may not look the way I did a year ago but that really doesn’t change who I am inside !!

It takes time to understand MG. There are times when I think I am not going to make it, and then I spring back to life.. just to fall again. It is truly unpredictable !!

It is hard to always stay positive. Sometimes I have to give in to the sadness, but I remind myself that emotions do pass… This phase too shall pass. I can pull myself together and lift my head up a little higher tomorrow. It’s okay to be mad and dislike what is happening. I keep reminding myself that I have so much in life to do yet. The power of support is amazing and I am thankful to everyone who has supported me.

Happiness is just around the corner waiting for me and I am ready to embrace it…”Never give up on life. More importantly, never give up on yourself.”

Sadly, life throws some pretty rough curves. However, “Every day is a new day.” With each new day, we have the opportunity for a new beginning. We can choose to make it a good day or choose to wallow in self-pity, and make it a bad day. Each of us has our own demons to fight. We can live life to the fullest of our abilities with dignity and grace. When we can’t see the forest for the trees because we are focused on for the sky to fall, we miss all the beauty of life behind the trees. “Life was made to live” so, “live it !”

On the last note. “The sun is shining, I did take my pills and it is a happy day !!”

I love my husband and my family. And it is for them today, that I sustain and endure this plight. My family is my strength. There is HOPE and I wait for a better phase ahead.

Why there is such a great lack of awareness about MG

I just read an article that mentioned MG. It did not say a lot but it did confirm the difficulty in making the diagnosis. It said that most of the neurologists have rarely seen anyone with it. It also stated that the standard “tensilon test” is unreliable in Anti-MuSk Ab+ MG patients. In most of these cases, the MG antibodies are not present or they don't show up in currently available tests. It is commonly misdiagnosed and is reported to only occur in a few like say a 10 people per million.

Now this explains why we face so much lack of awareness about it and people are just not ready to accept and believe even if there is no greater truth than it. Support the ones with such kind of conditions. It is not going to change the bitter truth of their suffering if the society chooses to “NOT  ACCEPT” it’s existence. You believe it or not it is for real !!

Do not make life more difficult for them they are already having a hard time. By not accepting you are increasing the already prevalent social stigma associated with such conditions.

Be compassionate.

Be considerate.

One of the worst mornings with MG

You probably have never heard of Myasthenia Gravis or MG. But I have a story to tell, and I believe it is important to be heard to raise awareness. It is about this morning, which is typical of most mornings for me, as I and many others like me who live with MG.

It is 8:45 in the morning and the sunbeams pierce the blinds on my bedroom window painting a shadow scene on the far wall, brought to motion by the gentle fall breeze outside as it nudges the foliage from a night’s slumber, awakening it also to begin another in a series of beautiful days. My eyelids begin their morning ritual of trying to part from each other due to ptosis or the drooping of eyelids because I do not have the strength to open eyes and lift the eyelids. Ever wondered how we take such tiny unnoticed but relevant events for granted.  How will they work today, better, worse, at all? Well, they are coming open, but my body feels melded to my mattress as I roll over to reach my medicines carefully positioned the night before on the stand beside my bed. I find my withered arm so weakened and frail that I am unable to reach for my pills. Not quite unfamiliar with this situation as one of my daily nuances, I move my hand into my pillowcase where I keep a spare dose in a small bag. I clutch the pills as best I can. The medicine in hand, the ritual of swallowing now confronts me, and this particular day although no saliva is dripping from the corners of my mouth because at its worst days, I sometimes cannot swallow my own saliva, my attempts to swallow require all the ingenuity and patience I can muster, still knowing that the pills will not go down. Hence, I place the pills beneath my tongue sometimes. Tolerating the bitterness and the burning as they slowly dissolve and waiting for their sustenance to enter my circulation and pass quickly to my muscles. It is as if the gentle breeze that moved the leaves now slowly puts my body into motion. It takes a good thirty minutes but I am now able to persuade my still begrudging legs into position so my feet will touch the floor. It is 9:15 now, and I am grasping for support since my leg muscles are affected and fragile as my day continues.

Have you ever thought of how you feel at the end of a long and hard day at work, maybe your shoulders heavy, arms hard to raise, standing upright may be a struggle, and muscles aching and fatigued? Take that feeling and add a 90-pound backpack to your load for the day. If you have not thought of it, think of it now, because it will help you understand. That is how I feel most of the time. Not as I end my day, but as I start it. It’s 10:15 a.m. It has been an hour and a half and the medicine’s effect has peaked, but that represents the apex of my day, for until the next day’s sunbeam begins its dance on that far wall, this represents the best that I will be doing during that period.

The toothbrush is now heavy in my hand, the jaw quickly fatigues from holding open my mouth, and a cough is stirred when a slight miscue in my swallowing mechanisms allows some of the toothpaste to enter my body since the muscles of the throat are weakened too. A cough itself fatiguing my respiratory muscles initiates an extended period of air hunger. I terminate the battle with the toothbrush. My hair is a mess, but cannot entangle it – too heavy a task for the hands and arms- and I can barely let my head down low enough for my hand to even guide the comb to put my hair in place. I quickly choose to pull off a scarf over my hair. To hide the mismanaged hair. Looking into the mirror, I see – oh well, two heads and four ears. The double vision is bad today, totally at its peak.  This leaves me with no strength and energy to bathe myself. The pirate-like patch I place on one eye will fix my double vision for now. But not long, enough before the eye in use becomes strained only for the patch to be changed to the other eye – positioning it to be next in the queue to get strained.

The clock shows 11:00 a.m. and my breathing now coming easier. I wasn’t able to get enough sleep at night due to heavy struggled breathing due to the weakened diaphragm. There is nothing wrong with my heart or lungs. Still the shallow breaths not enough to supply required oxygen to the body. I now find myself able to get the other needed medications – the immunosuppressants and the immunomodulators to keep at bay the antibodies against my own muscles, the calcium supplement to keep the cortisone from robbing calcium from my bones, the muscle strengthener that helps the muscles work better, the antispasmodic to keep the muscle-strengthening pill from cramping my stomach and bowels, and what not. Sometimes I wonder if the disease or the treatment is more difficult to bear with. In all, over 10 pills a day. What if it never gets better? Suddenly the anxiety and uncertainty start to seep in. Thank God for a wonderful family !!

Since I’m bent toward musing, during my struggle a recurring thought appears – there’s a HOPE out there, and I know it. Cutting-edge research will come to fruition any time now. I have heard about miracles happening. When will I get it?

It is 11:30 a.m. now and I have made it to the kitchen. Would you like to join me for a brunch, and of course, hear the rest of the story?

-ANONYMOUS

P.S.: This post is similar to one of the articles titled “Living With Myasthenia gravis”, which was published on 9th of Sep 2014, on a support group – Myasthenia gravis society. I do not have any idea about the author. But really wanted to share the details of my own story with the readers to spread awareness about MG.

An Invisible Disability

How do you explain to someone how Myasthenia Gravis (MG) makes you feel?

It makes me tired but not the kind of tiredness you feel after a long day at work. It's an extreme fatigue feeling that can leaves me with arms which feel like rubber bands or legs that are like noodles. My neck will ache from trying to keep my head upright and the droopy eyes I hide with sun glasses at odd times of the day or an eye patch most of the days. Some days I will choke on my own spit and I cant smile because my facial muscles won't contract. My family knows to let me be alone for some time because I need to be with myself. This is what makes me feel miserable and vulnerable having nothing else to think of but keep pondering over a thought of helplessness. But I never loose hope. I sweat from the medicines I take so even on the coldest days you will find me outside fanning myself. I've lived with this for quite a long time, that the symptoms are a second nature to me now.

I know how to read my body and the dangers that MG could cause me but still, I have days where I get scared, lots of them. Mostly the nights to spend with breathless chocking sensations and heat flushes. There are times I can't see what you do and I can't speak what you expect me to. But that doesn't imply I don't want to talk or meet you. I might just not be able to do so....

Today is so beautiful and warm but I don't dare sunbathe because for some reason this makes my symptoms flare. That's okay, I don't feel I'm missing out. I cant sing my heart out or cant dance madly to my favorite tunes. I can't stress out on what I don't have or what I can't do or else I'd go crazy counting the innumerable things. Autoimmunity has made me sacrifice a lot but I cant let it do this to me anymore. I'm grateful for every day I see and for my family and friends around me. I still hold on to the hope for a cure and for a better future. For all of you who have MG, we have to fight a little harder for today if the day seems brighter at this moment, it definitely might not be the same the very next hour !!

It is complicated to explain others what it feels to survive and fight this invisible disability. Yes MG is a neuro-muscular autoimmune crap but the word "NEURO" doesn't make me a lunatic or a psychopath or an insane person with an unsound mind. The person thinking so is the biggest lunatic. Had you been in my shoes you would realize what this walk means. It gets difficult to get through it every passing moment. But it isn't impossible with the support of my lovely friends and a caring family. Thank you all n love you lots !! Will never be able to explain to you what have you all around means to me. And those who do not understand what MG presents to us...rather than commenting on someone with chronic illnesses or being judgemental for their "not so normal" life, or accusing them for being over sensitive and emotional - just thank God that you or your loved ones have not received this unexpected surprise gift from God....

A big salute to all the Warriors fighting MG and other chronic illness !!

You are the courage personified 😊 

You are the embodiment of HOPE

Choose to keep going and choose to spread awareness

Everyone Has Their Own Demons To Fight

I am 32 and I struggle with Social Anxiety along with Myasthenia Gravis. I know it's a new term for many. It was for me too a few years back.

I embrace who I am. I have never restricted myself to talk about my illness. People need to know and be aware that such a thing exists. It's not fake or psychological as some may think. Rather a painful reality that the society chooses to hide in stigma. It's not a taboo. I have cultivated the courage to accept that in some aspects I am imperfect. It needs guts to set boundaries for yourself - to say 'no' !!

Everyone fights their own demons at some or the other point in their lifetime. Mine was a bit early though. I choose to be a warrior. No matter what I have been through, I am still here. Fighting my chronic fatigue everyday I am face to face with social anxiety issues in every aspect of my daily routine. I may have been challenged but Myasthenia Gravis (MG) has not defeated me. Neither will I ever let it !!

I have to make choices at every aspect of life. It's not a defeat but bravery to choose what is right for your health. Nothing is more worth than your own well-being. I have to fight against my body on a daily basis I am not willing to fight anything or anyone else. I need my energy and will to struggle for life rather than be involved in the stigma that people have against someone with chronic illness. I may not be able to do certain things due to my chronic autoimmune disorder, but that doesn't mean I should be deprived of any love or respect as a human being that I deserve. I am not my disease. I am someone who is fighting it valiantly !!

I love my family and friends.. cheers to all those who support me. I am on a mission to De-Stigmatise mental health issues and chronic illnesses. You make me want to live. It's your love that I get my energy drive from, to fight this demon of mine - my autoimmune MG. I call it mine because it is very much a part of my lifestyle. My daily routine is affected by it. If I invest my energy in doing one chore I have to literally snatch energy doing some other thing. I have a limited number of spoons and battery to use it wisely n choose the tasks that matter the most. This is very depressing at times. Not being able to do normal things that most people do quite easily. We take so many things for granted only to realise what they mean to us when we loose them. But I allow myself to be away from any negativity. I do not have to let anyone hurt me even emotionally or mentally for that matter because it will have a very negative effect on me health wise...triggering the stress associated symptoms of MG.. stress is one of my biggest demon. But to avoid stress and anxiety I have my own coping mechanism. Prioritising is the key and I have learnt very much to prioritise in life.

It needs a great deal to associate yourself with someone who constantly needs your love n assistance. Who needs you to lift her spirit every time she gets disheartened and troubled by her limitations. With me that happens often. But my husband does it wonderfully for me - not letting me fall apart. Love you hubby !!

I am equally grateful to my parents and to my in-laws for loving me... To encourage me when I find myself depressed due to many things that I cannot do. And not to forget my adorable granny n ever encouraging brother, my super helpful besties, my soul sisters and brothers .. my cousins. All of them have had a great impact on my life positively.

They are the true jewels in my necklace of life. Thanks for being there for me always !!